Saturday, September 1, 2012

Get Your ZZZ's

UPDATED: 08/31/2012

OK, I am going to let a bit more of our family life out of the bag here.

Like you, we are proud of all five of our grown children. And like all kids, ... each one is very unique. Here is our youngest daughter, Leah when she was playing softball back in her high school years. Leah is very special to us for several reasons.

Life for Leah has been an everyday battle since the spring of her 7th grade year in school. Leah was diagnosed with severe Narcolepsy with Cataplexy (seizures). Life has been struggle for Leah in so many ways to stay awake during the day and get restful sleep during the night. Some side effects to this autoimmune disorder can be socially devastating. Narcolepsy and its symptoms literally turned Leahs world upside down more than 8 years ago. Nothing is easy for her!

Leah experienced every known symptom in spades including:

1. Cataplexy (seizures with loss of muscle control). Often, narcolepsy may cause you to have a sudden loss of muscle control while awake, usually triggered by strong emotions, such as laughing or crying. In Leah's case these were triggered by humor. She would be knocked down as many as 30 times a day for varying lengths of time.
2. Hallucinations. Some people with narcolepsy experience vivid, sometimes frightening, visual or auditory sensations while falling asleep or upon awakening. This was one of the most terrifying experiences for Leah when she was 12 years old. This is very frightening for a child and kept Leah from sleeping soundly. During its most terrifying times, Leah would cling to her mother and me so that it was difficult for us to sleep too.
3. Sleep paralysis. You may be unable to move or talk at the beginning or end of sleep. Leah is often awake but cannot move. She is trapped until her mind lets go of her and allows movement. The ramifications of this are very concerning to parents.
4. Microsleep is a very brief sleep episode during which you continue to function (talk, put things away, etc.), and then awaken with no memory of the activities. Leah could take tests in school while asleep. This would only really become visible in her handwriting which grew smaller. She could sort papers and do many mechanical movements while completely in REM. If you startled her from this sleep simply by talking to her she could become very explosive. She may have been startled from deep REM and angered out of a dream with no understanding as to why she was upset. Wakeful movement had to be discerned from being automatic behavior. Just because she was doing things did not mean she was awake.
5. Rapid entry into REM sleep. Narcoleptics have unique sleep cycles. You may enter the REM or dream phase of sleep right after falling asleep, whereas most people take about 90 minutes to enter REM. Therefore, you’ll experience the characteristics of REM sleep (vivid dreams and muscle paralysis) at the beginning of sleep, even if that sleep is during the day. For Leah, reaching REM sleep required less than 120 seconds of boredom ... way faster in a warm moving car.

Having said all this ... let me also say that Leah is awesome!

If I were to write a thousand pages regarding Leah ... I could not capture the entire story. She has altered the lives of every member of this family forever. This was extremely difficult to deal with in the early years of discovery as Leah’s Narcolepsy destroyed the “occasional” (haha) harmony of our family. I cannot begin to tell you the grief, anger, sorrow and despair this triggered in me and others in our family. No one is the same. It's not all good but it's not all bad either! The goodness of the Lord has also been seen clearly on many occasions.

God miraculously gave us access to the very best doctors in the world. We took her to see Dr. Emmanuel Minot's team at Stanford University Sleep Clinic in California. The road is still tough but it is better in most ways now. God has been VERY good to us all.

Leah, now nearly 21, IS a fighter! She is now attending community college, has found employment and has even started her own craft business called “Get Your ZZZ’s” from our home. Leah makes Scrabble Tile Necklaces to stay awake during the day. There is a million different designs, actually whatever you can think of mounted to a tile.


Severe Narcolepsy usually sidelines a person from interaction with the outside world during the formative social years and has devastating effects socially for life. But God, in His goodness, has allowed Leah to have the fight required to stay active in ways that are very unusual for people with her affliction.

I love this photo of Leah playing Varsity softball in high school. We could see evidence of her will to compete even when Narcolepsy tried to hold her down. Again, God has been VERY good to you Leah!

Trust in the Lord with all your heart and lean not on your own understanding; in all your ways acknowledge him, and he will make your paths straight. Proverbs 3:5-6
May God bless you in special ways ... today!

NikonSniper Steve (Love, Dad)


Child of God said...

Still covering your sweet daughter, Leah in prayer.
I'll check her her site, she looks pretty creative, like father like daughter??


Judy said...

What an amazing blessing she is!

Cathy said...

What a beautiful post. It's inspiring to hear of ordinary people's triumphs over struggles dealt to them. Sounds like Leah is blessed to have a wonderful family. Best of luck with her business venture!

Lynda said...

Good for her and her perseverance and your loving support!

Ruth said...

Amazing what your family is accomplishing together. A support team is awesome when faced with a difficult task.

Vivian said...

This verse came to mind after reading your warm and inspiring post to your lovely daughter, Leah...

"I can do all things through Christ who strengthens me"
~ Philippians 4:13

I will keep you, Leah and your family in prayer.

God bless you!